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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

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Old 04-25-2016, 05:30 PM   #1
gingin623
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Newbi Here

Hi everyone

I know in the beginning 2009 when I was given the news from hell I wished I had someone who could have advised me especially about grieving my old life and accepting my new (very hard time with this). But sometimes you just cant talk to family or friends (if you have any) and need someone to grab your hand and just listen.

Wishing all a pain free day one day at a time

gingin

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Old 05-06-2016, 11:59 AM   #2
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Re: Newbi Here

Hi, so sorry you are here but welcome. That is what these boards are all about, sharing and compassion with people who unfortunately know your pain and frustrations. I have had it since 2010 and at times still grieve over my lost life and activities. Other times, you just do what you can and deal with it the best you can. It can get very depressing and it helps to talk with people who know what you are going through since no one else can really understand what it is like. Keep your chin up and just try to do your best to have as much of a normal life as you can.

 
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Old 05-07-2016, 05:54 AM   #3
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Re: Newbi Here

I would love to chat with you. I am trying to find ways to deal with this, trying to find a way to go back to work, and trying to keep my sanity. Let me know if we can chat sometime.

 
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Old 05-08-2016, 10:11 AM   #4
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Re: Newbi Here

Cyndel thank you so much I was beginning to think no one was out there. OMGosh you sound just like me I mean what I am going through. Where do you have it and how did you get it? What treatments have you taken or are currently on now? What worked what didn't work?

 
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Old 05-08-2016, 10:23 AM   #5
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Re: Newbi Here

FLKeith I am here to listen anytime you need to chat, please tell me more about when and how you got RSD what treatments have you been on? What has worked for you so far? I believe the best way to deal with RSD is to admit to yourself that you have it and what your life use to be is no more. This is very hard at least for me it was. I cried all the time I lost everything and still have not come to grips with it all. I do believe that having someone to talk to helps tremendously with the depression. I had to move in with my sister and her husband, I can not talk to her she thinks it is all in my head even though I can not walk on most days I am totally depend on her and I hate it. I am hoping I can help myself by helping others. So please express yourself tell it like it really is believe me I understand.

gin

 
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Old 05-09-2016, 06:25 PM   #6
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Re: Newbi Here

I really hate that this has happened to others and that it has happened to me. I am tired of the fact people, including my wife, think that CRPS/RSD is no big deal. I feel like people look at this as if "how could it possibly hurt that bad?" This has been such a struggle but I am sure I am "preaching to the choir" here, where everybody does understand.

I have tried many types of treatment, medications, physical therapy, lumbar nerve blocks, ganglion nerve blocks and so far NOTHING seems to help very much (if at all). One of my doctors wants to try IVIG treatments and another doctor is suggesting Ketamine treatments......does anybody know much about these treatments??

 
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Old 05-10-2016, 10:54 AM   #7
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Re: Newbi Here

Quote:
Originally Posted by FLKeith View Post
I really hate that this has happened to others and that it has happened to me. I am tired of the fact people, including my wife, think that CRPS/RSD is no big deal. I feel like people look at this as if "how could it possibly hurt that bad?" This has been such a struggle but I am sure I am "preaching to the choir" here, where everybody does understand.

Hey hope this finds you in good spirits and excuse the lengthiness!

I have tried many types of treatment, medications, physical therapy, lumbar nerve blocks, ganglion nerve blocks and so far NOTHING seems to help very much (if at all). One of my doctors wants to try IVIG treatments and another doctor is suggesting Ketamine treatments......does anybody know much about these treatments??
Hi FLKeith I can speak to the Ketamine treatments, they don't always work for everyone and some can go months even years before getting a booster. This has been my personal experience:

I started out with all the drugs (almost killed me) I couldn't take the drugs they damaged my heart had to have open heart surgery. I was tested and had the spinal cord stimulator put in (work great for me) keep in mind what works for one doesn't always work for others. After developing an infection at the site of the battery (6 weeks post op) I ended up with MRSA at both incision spots. I then ended up allergic to the medicine they were giving me for the MRSA ( spent 1 month, almost died in hospital). Now since I could not take the pain meds and I could not have the spinal cord stimulator, my PM suggested Ketamine and I am glad he did. He started me out with the 5 day outpatient treatment, then the three day and now I am on 1 day booster every 4 to 6 weeks. Keep in mind I am no longer on the pain meds.

After my treatments I feel like my old self I have little to no pain, all my deformities go back to normal, yes I have those too seems my foot wants to turn upward and stay there. because I am unable to sit stand and walk without assistance I am unable to work, not to mention the medications and/or RSD has messed my mind up seems I have a hard time remembering and concentrating.

I believe I am now going into a full spread we shall see, but my whole body is burning and hurts to the point I hate to move but know I have to.

That is the key to this dreaded mess keep moving no matter how bad it hurts.

When I was at my worst back in 2011 my sister took me in and cared for me, I lost all self worth, I still live with my sister I am a prisoner since I am unable to drive I am at her mercy and currently I hate my life. Some might say move if it is so bad but finding a place I can afford on SSD is really hard and then how can I move. She has gotten mean and hateful I dont understand it all she has to do is take me to the doctors, I just got yelled at for having to travel to get new prescriptions.

Oh what a messy day but hey got good news my lung disease is unchanged so I won't die tomorrow. LOL

Keep chin up, PS My sister thinks it is all in my head, but I know its not so do you know how you really feel. It is very very important to have someone to talk too about this RSD I just wished family members would invest the time to get to know the people and the disease.

Have a good day and do all you can today and have fun, you can pay for it tomorrow and then start over again

 
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Old 05-10-2016, 03:50 PM   #8
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Re: Newbi Here

Wow, I am so sorry to hear of your issues....makes me embarrassed that I made mention of mine. I will, for sure, keep you in my thoughts and prayers.

 
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Old 05-11-2016, 01:11 PM   #9
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Re: Newbi Here

Hi FLKeith
Hope your day is going good, don't be embarrassed everyone's issues are different in many ways even though some are the same they affect us differently.

That is why it is so good to have someone who understands and is not judgemental.

Here's wishing you a pain free day!

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Old 06-10-2016, 05:59 PM   #10
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Re: Newbi Here

Hi gingin,

If I understood correctly, you had improvement with ketamin treatment and now you have burning pain again? How long was your improvement and how painful are ketamin injections?

 
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Old 01-07-2017, 07:43 PM   #11
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Re: Newbi Here

Welcome...

I am fairly new here. I have been trying to find a fairly active RSD/CRPS forum but their don't appear to be many.
I hope you get relief. I use medication and exercise to help.
I have heard a lot of mixed things about ketamine so I have not looked into it much.
There are new treatments and med on the horizon however.

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Old 01-09-2017, 05:09 PM   #12
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Re: Newbi Here

Quote:
Originally Posted by gingin623 View Post
Hi FLKeith I can speak to the Ketamine treatments, they don't always work for everyone and some can go months even years before getting a booster. This has been my personal experience:

I started out with all the drugs (almost killed me) I couldn't take the drugs they damaged my heart had to have open heart surgery. I was tested and had the spinal cord stimulator put in (work great for me) keep in mind what works for one doesn't always work for others. After developing an infection at the site of the battery (6 weeks post op) I ended up with MRSA at both incision spots. I then ended up allergic to the medicine they were giving me for the MRSA ( spent 1 month, almost died in hospital). Now since I could not take the pain meds and I could not have the spinal cord stimulator, my PM suggested Ketamine and I am glad he did. He started me out with the 5 day outpatient treatment, then the three day and now I am on 1 day booster every 4 to 6 weeks. Keep in mind I am no longer on the pain meds.

After my treatments I feel like my old self I have little to no pain, all my deformities go back to normal, yes I have those too seems my foot wants to turn upward and stay there. because I am unable to sit stand and walk without assistance I am unable to work, not to mention the medications and/or RSD has messed my mind up seems I have a hard time remembering and concentrating.

I believe I am now going into a full spread we shall see, but my whole body is burning and hurts to the point I hate to move but know I have to.

That is the key to this dreaded mess keep moving no matter how bad it hurts.

When I was at my worst back in 2011 my sister took me in and cared for me, I lost all self worth, I still live with my sister I am a prisoner since I am unable to drive I am at her mercy and currently I hate my life. Some might say move if it is so bad but finding a place I can afford on SSD is really hard and then how can I move. She has gotten mean and hateful I dont understand it all she has to do is take me to the doctors, I just got yelled at for having to travel to get new prescriptions.

Oh what a messy day but hey got good news my lung disease is unchanged so I won't die tomorrow. LOL

Keep chin up, PS My sister thinks it is all in my head, but I know its not so do you know how you really feel. It is very very important to have someone to talk too about this RSD I just wished family members would invest the time to get to know the people and the disease.

Have a good day and do all you can today and have fun, you can pay for it tomorrow and then start over again
I am glad ketamine..worked for you.
People who think it is in your head, do not appear to be all that intelligent. I have a few relatives like that. They tend to be rather simple minded as if they believe the world is still flat.
My doctor explained to me that essential all pain is in your head, thru the brain is how we perceive pain. When the nervous system has such a malfunction, it is common to have sorts of such symptoms. Even if it were purely psychological, it doesn't make it any less horrific for the person experiencing it. I have written off people who say such things to me, they are not worth my time. They may not even be smart enough to understand anyway. Plus, it is cruel...and showing that person is an uncaring cold soul. Sad.

 
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Old 01-09-2017, 05:12 PM   #13
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Re: Newbi Here

Quote:
Originally Posted by FLKeith View Post
I would love to chat with you. I am trying to find ways to deal with this, trying to find a way to go back to work, and trying to keep my sanity. Let me know if we can chat sometime.
Let me know if you still need someone with which to chat. I am cool with that and it can help.

 
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